The following was in my Facebook newsfeed the other day and I had to share. I also added my own comments to it. I will also talk about the medical world here. Here's the original post.
Worth the read... For everyone especially parents and coaches
Coach Scolinos died in 2009 at the age of 91, but not before touching the lives of hundreds of players and coaches, including mine. Meeting him at my first ABCA convention kept me returning year after year, looking for similar wisdom and inspiration from other coaches. He is the best clinic speaker the ABCA has ever known because he was so much more than a baseball coach.
His message was clear: “Coaches, keep your players — no matter how good they are — your own children, and most of all, keep yourself at seventeen inches.
source
In Nashville, Tennessee, during the first week of January, 1996, more than 4,000 baseball coaches descended upon the Opryland Hotel for the 52nd annual ABCA convention.
While I waited in line to register with the hotel staff, I heard other more veteran coaches rumbling about the lineup of speakers scheduled to present during the weekend. One name, in particular, kept resurfacing, always with the same sentiment — “John Scolinos is here? Oh man, worth every penny of my airfare.”
Who the heck is John Scolinos, I wondered. Well, in 1996 Coach Scolinos was 78 years old and five years retired from a college coaching career that began in 1948. No matter, I was just happy to be there.
He shuffled to the stage to an impressive standing ovation, wearing dark polyester pants, a light blue shirt, and a string around his neck from which home plate hung — a full-sized, stark-white home plate. Pointed side down.
Seriously, I wondered, who in the hell is this guy?
After speaking for twenty-five minutes, not once mentioning the prop hanging around his neck, Coach Scolinos appeared to notice the snickering among some of the coaches. Even those who knew Coach Scolinos had to wonder exactly where he was going with this, or if he had simply forgotten about home plate since he’d gotten on stage.
Then, finally …
“You’re probably all wondering why I’m wearing home plate around my neck. Or maybe you think I escaped from Camarillo State Hospital,” he said, his voice growing irascible. I laughed along with the others, acknowledging the possibility.
“No,” he continued, “I may be old, but I’m not crazy. The reason I stand before you today is to share with you baseball people what I’ve learned in my life, what I’ve learned about home plate in my 78 years.”
Several hands went up when Scolinos asked how many Little League coaches were in the room. “Do you know how wide home plate is in Little League?” After a pause, someone offered, “Seventeen inches,” more question than answer.
“That’s right,” he said. “How about in Babe Ruth? Any Babe Ruth coaches in the house?”
Another long pause.
“Seventeen inches?”came a guess from another reluctant coach.
“That’s right,” said Scolinos. “Now, how many high school coaches do we have in the room?” Hundreds of hands shot up, as the pattern began to appear. “How wide is home plate in high school baseball?”
“Seventeen inches,” they said, sounding more confident.
“You’re right!” Scolinos barked. “And you college coaches, how wide is home plate in college?”
“Seventeen inches!” we said, in unison.
“Any Minor League coaches here? How wide is home plate in pro ball?”
“Seventeen inches!”
“RIGHT! And in the Major Leagues, how wide home plate is in the Major Leagues?”
“Seventeen inches!”
“SEV-EN-TEEN INCHES!” he confirmed, his voice bellowing off the walls.
“And what do they do with a a Big League pitcher who can’t throw the ball over these seventeen inches?” Pause. “They send him to Pocatello!” he hollered, drawing raucous laughter.
“What they don’t do is this: they don’t say, ‘Ah, that’s okay, Bobby. You can’t hit a seventeen-inch target? We’ll make it eighteen inches, or nineteen inches. We’ll make it twenty inches so you have a better chance of throwing the ball over it. If you can’t hit that, let us know so we can make it wider still, say twenty-five inches.’”
Pause.
“Coaches …”
Pause.
” … what do we do when our best player shows up late to practice? What do we do if he violates curfew? What if he uses drugs? Do we hold him accountable? Or do we change the rules to fit him? Do we widen home plate?
The chuckles gradually faded as four thousand coaches grew quiet, the fog lifting as the old coach’s message began to unfold.
Then he turned the plate toward himself and, using a Sharpie, began to draw something. When he turned it toward the crowd, point up, a house was revealed, complete with a freshly drawn door and two windows. “This is the problem in our homes today. With our marriages, with the way we parent our kids. With our discipline. We don’t teach accountability to our kids, and there is no consequence for failing to meet standards. We widen the plate!”
Pause.
Then, to the point at the top of the house he added a small American flag.
Then, to the point at the top of the house he added a small American flag.
“This is the problem in our schools today. The quality of our education is going downhill fast and teachers have been stripped of the tools they need to be successful….to educate and discipline our young people. We are allowing others to widen home plate! Where is that getting us?”
“And this is the problem in the Church, where powerful people in positions of authority have taken advantage of young children, only to have such an atrocity swept under the rug for years. Our church leaders are widening home plate!”
I was amazed. At a baseball convention where I expected to learn something about curveballs and bunting and how to run better practices, I had learned something far more valuable. From an old man with home plate strung around his neck, I had learned something about life, about myself, about my own weaknesses and about my responsibilities as a leader. I had to hold myself and others accountable to that which I knew to be right, lest our families, our faith, and our society continue down an undesirable path.
“If I am lucky,” Coach Scolinos concluded, “you will remember one thing from this old coach today. It is this: if we fail to hold ourselves to a higher standard, a standard of what we know to be right; if we fail to hold our spouses and our children to the same standards, if we are unwilling or unable to provide a consequence when they do not meet the standard; and if our schools and churches and our government fail to hold themselves accountable to those they serve, there is but one thing to look forward to …”
With that, he held home plate in front of his chest, turned it around, and revealed its dark black backside.
“… dark days ahead.”
Coach Scolinos died in 2009 at the age of 91, but not before touching the lives of hundreds of players and coaches, including mine. Meeting him at my first ABCA convention kept me returning year after year, looking for similar wisdom and inspiration from other coaches. He is the best clinic speaker the ABCA has ever known because he was so much more than a baseball coach.
His message was clear: “Coaches, keep your players — no matter how good they are — your own children, and most of all, keep yourself at seventeen inches.
source
I added when I shared it: Something for everyone to think about. Sports has nothing to do with it but events our kids participate in often show not how good they are but how good they are not. It shows what they have been taught, not in the skill but in the attitude.
Isolating people just because they aren't like you is part of the problem. Putting labels on people is part of the problem. Treating those kids around you differently than you would your own kids is part of the problem. Teaching your children that Varsity is better than JV is part of the problem. Teaching your children that making those that look or act different than them an outcast is part of the problem. For silencing the ones who speak out, you either crush their spirit or make them fight harder. For calling children a liar and or they deserved it when they tell you they are being bullied, abused or mistreated. For punishing the victim but not the perpetrator and or making excuses for what they did to others. For looking at the poor parent in the stands at the football game and snickering to your friends because they don't look or act like you. For telling the parent of a child with a disability they don't belong and neither does their "retard" child. (I hate that word by the way but it's also been used against my kids....) For telling the parent of a child with a chronic medical crisis that they asked for it and to fend for themselves, while you donate to a well known patron fighting cancer or any other illness. For those who see a need in the community but refuses to help unless they get something in return. For those who see a person in need but turn the other cheek because the person that is in need, they don't like, or is whatever label(s) you want to put on them. For the kids who encourage bullying and the parents who let them. For the first ones to be at the church pews on Sunday yet during the week teach their kids through action that porn and or infidelity is okay. For the ones who sit in the pews on Sunday but during the week single out people because they are different. For those who say they help the poor but ignore the homeless. For those who act all nice to people in church yet gossip about them to their friends or on social media. For those who preach Jesus loves you but doesn't love their neighbor (EVERYONE ELSE!) as God also commanded. For those who tell others who serve that they are no good yet refuse to help. For those who tell the bereaved to "get over it" yet they won't let go the hatred of the driver who cut them off at Wal-Mart. YOU doing any of that is part of the problem.
I could go on and on......
Yet we wonder why kids are cruel. It's because many parents teach them either to be cruel or do nothing to stop it.
Think on that.
Within comments on one of the pages I shared this to, I added this. (Condensed comments)
This was not written because of how people have or have not treated me in my life, this was written because I know many who have had it happen to them. Some local, many not. This was a reminder that how we treat others sets the example for how our kids treat others as well, and even if we don't teach our kids through actions and behaviors like that, doing nothing teaches them that it's okay also.
And yes, some of those very statements have been said to or about me/my kids. Some were locals and some were family. However, I'm okay honestly. This wasn't written for or about me, it was written as a reminder for all of us to think about how we treat others and the examples we show to others but especially to our children. I don't agree with participation trophies nor everyone playing each sport just because they want to. Skill has to be there. I can't sing so I won't try to join choir. *cringe* I can't run fast so I won't try track and field. It would leave for some great AFV clips though! 🤣😂 My comment about varsity being better than JV was part of the point in how some parents tell their kids that just because someone is or isn't on a team or type of team doesn't make them any better or any worse than someone not on a team.
I do agree as well with the original article. Not everyone can make the team but on a team or not shouldn't matter how anyone treats anyone else and oftentimes people act like it does. The outcast loner in high school is no better and no worse than the varsity quarterback who has won state three years in a row. A musician who has only played for a year doesn't get rewarded with first chair if another player has been playing for three years and does better than the first year player does. That's not how band works either. Never has. That shouldn't change either. However we shouldn't treat them any less than we would anyone else in the band. First chair, last chair, best on the team, worst on the team it all doesn't matter. All deserve love and respect and to be heard. I didn't say all rewarded the same. Absolutely not. You won't reward an F student right? So why reward someone who doesn't make the cut? Yet that doesn't make them any worse or better than anyone else.
A working mom is no worse or better than the one who stays at home, yet many judge and or question the motives of both. We judge and or get judged for how many kids we have, how much money we make, the car we have or don't have, who we know and are related to, how long one has lived in a small town vs being born there or even living there at all. We judge each other for how good our makeup is or isn't, who our friends are or aren't along with how many we have, and so much more. That's my point. We as humans gotta just quit the labels, quit the excuses, treat others as God says we should. Love and help others without complaint, without expecting stuff back without bias or judgment on who or what a person is. Yet we don't. That was my whole point. We all gotta do better. I wish bad apples didn't exist, you know? They ruin the crop and make it all look bad. That's why I do what I do. That's why I say what I do, liked for it or not. To make a point. To show people what is going on around them. To show them that life is hard but how they treat others can also make a huge difference. You know I tried to take my life when I was 12 because of how others treated me? Because of how unloved I was? Because of how unwanted I was? Because I was an outcast? Because I was forced into silence? Because I was blamed? Because the victim was always punished. Not anymore. I vowed at 18 I would stand tall, stand strong and stand for others who can't. That's why I am the way I am. That's why I will always fight. That's why I don't care who gets in my way, I will always fight for my kids, even if I'm the only one because at least they will be able to say someone did. They will never have to see the hell I did. They will never have to feel the hell I did. They will never have to know what that was like. They will always be able to stand there and say that no matter what, someone had their back. They will not have to claw their way back up alone. They will never have to figure it out alone. They will never have to feel like they are unloved or unwanted. I will make sure of that. That is why I speak out, call out injustice, loud and proud. That way if nobody else will stand for them, at least someone will. And you know what? I know I'm not alone. I have read many posts from people like me, survivors, special needs parents, and honestly a little of both and or been told from others who struggle with stuff like me, even a few locals. Their stories, my life, their souls, they inspire me. My posts on social media, including my Blogger page isn't just speaking for myself. I have been told stories, read posts and been messaged about what I have shared and how I have helped others because I spoke out. Not just locals around here either but people across the country. Why? Because I spoke up and because I refused to stand down. I have been told by a few that I saved them from suicide. No joke.... By sharing pieces of my story, by sharing my thoughts, by sharing statistics, by talking about the stuff people don't want to hear. I have helped others. And if that means people look at me bad including some family, because they have, then so be it because at least I know I have made a difference.
What I am saying here isn't towards anyone in particular, this is for anyone who wants to read it because it's the truth. Ugly, beautiful or in the middle, it's the truth.
On the flip side, as many as I know I've helped with my posts, stats, stories, I've also been told by a few that I need psych help. That I need meds and therapy. Well, first off, are they going to pay for it? Easily $30 a session and I'm not paying for that. Meds I might consider but not if the side effects are bad. Psych help? We all need a little help! Why do you think many have a hobby? I write (obviously) but I also research, listen to music and play music. My daughter has been told that I suck at music but too bad, those people suck for telling my kid that I do. What's that teaching her about her journey with music? Besides, if I "sucked" so bad, why am I still asked to participate in services and also community music? Good thing I had a good life lesson for her in that discussion when she told me someone at church told her that. My older kid wants to eventually play on stage and community band but what if people start talking about her behind her back because she doesn't play "good enough"? Will she have the confidence to tell people to kiss her grits and keep going anyway? (My life experiences helped in that lesson because I also proved that I didn't give up when I easily could have with music, both with the flute early on, recent years and the clarinet the last seven months.) Well, I never could major in music education like I wanted because I couldn't afford a good college, I quit playing entirely for several years before picking my horn up again, I also now have priorities beyond being a "perfect" musician, including being a wife, mom and advocate so there you go. I told her to stand tall and keep on playing because as long as she does her best and never stops learning anything in life, that's all that matters.
So you know, regardless of how someone serves in their community, don't tell them "you suck" because maybe it's you that sucks, not them.
Anyway.....
I don't get out much beyond appointments and church stuff and overall that's fine. I used to be unhappy with that but not in recent months. I'm embracing it more. Enjoying the solitude more. I'm not the extrovert I once was. Yeah, life has changed me but change isn't always bad. (It's a miracle I actually said something like that!) haha! It saves me the drama, the stupid gossip women do and it also saves me the looks of eyes glazed over like glazed donuts when I get asked about my son and the only answer they wanted was "good".
This was not written because of how people have or have not treated me in my life, this was written because I know many who have had it happen to them. Some local, many not. This was a reminder that how we treat others sets the example for how our kids treat others as well, and even if we don't teach our kids through actions and behaviors like that, doing nothing teaches them that it's okay also.
And yes, some of those very statements have been said to or about me/my kids. Some were locals and some were family. However, I'm okay honestly. This wasn't written for or about me, it was written as a reminder for all of us to think about how we treat others and the examples we show to others but especially to our children. I don't agree with participation trophies nor everyone playing each sport just because they want to. Skill has to be there. I can't sing so I won't try to join choir. *cringe* I can't run fast so I won't try track and field. It would leave for some great AFV clips though! 🤣😂 My comment about varsity being better than JV was part of the point in how some parents tell their kids that just because someone is or isn't on a team or type of team doesn't make them any better or any worse than someone not on a team.
I do agree as well with the original article. Not everyone can make the team but on a team or not shouldn't matter how anyone treats anyone else and oftentimes people act like it does. The outcast loner in high school is no better and no worse than the varsity quarterback who has won state three years in a row. A musician who has only played for a year doesn't get rewarded with first chair if another player has been playing for three years and does better than the first year player does. That's not how band works either. Never has. That shouldn't change either. However we shouldn't treat them any less than we would anyone else in the band. First chair, last chair, best on the team, worst on the team it all doesn't matter. All deserve love and respect and to be heard. I didn't say all rewarded the same. Absolutely not. You won't reward an F student right? So why reward someone who doesn't make the cut? Yet that doesn't make them any worse or better than anyone else.
A working mom is no worse or better than the one who stays at home, yet many judge and or question the motives of both. We judge and or get judged for how many kids we have, how much money we make, the car we have or don't have, who we know and are related to, how long one has lived in a small town vs being born there or even living there at all. We judge each other for how good our makeup is or isn't, who our friends are or aren't along with how many we have, and so much more. That's my point. We as humans gotta just quit the labels, quit the excuses, treat others as God says we should. Love and help others without complaint, without expecting stuff back without bias or judgment on who or what a person is. Yet we don't. That was my whole point. We all gotta do better. I wish bad apples didn't exist, you know? They ruin the crop and make it all look bad. That's why I do what I do. That's why I say what I do, liked for it or not. To make a point. To show people what is going on around them. To show them that life is hard but how they treat others can also make a huge difference. You know I tried to take my life when I was 12 because of how others treated me? Because of how unloved I was? Because of how unwanted I was? Because I was an outcast? Because I was forced into silence? Because I was blamed? Because the victim was always punished. Not anymore. I vowed at 18 I would stand tall, stand strong and stand for others who can't. That's why I am the way I am. That's why I will always fight. That's why I don't care who gets in my way, I will always fight for my kids, even if I'm the only one because at least they will be able to say someone did. They will never have to see the hell I did. They will never have to feel the hell I did. They will never have to know what that was like. They will always be able to stand there and say that no matter what, someone had their back. They will not have to claw their way back up alone. They will never have to figure it out alone. They will never have to feel like they are unloved or unwanted. I will make sure of that. That is why I speak out, call out injustice, loud and proud. That way if nobody else will stand for them, at least someone will. And you know what? I know I'm not alone. I have read many posts from people like me, survivors, special needs parents, and honestly a little of both and or been told from others who struggle with stuff like me, even a few locals. Their stories, my life, their souls, they inspire me. My posts on social media, including my Blogger page isn't just speaking for myself. I have been told stories, read posts and been messaged about what I have shared and how I have helped others because I spoke out. Not just locals around here either but people across the country. Why? Because I spoke up and because I refused to stand down. I have been told by a few that I saved them from suicide. No joke.... By sharing pieces of my story, by sharing my thoughts, by sharing statistics, by talking about the stuff people don't want to hear. I have helped others. And if that means people look at me bad including some family, because they have, then so be it because at least I know I have made a difference.
What I am saying here isn't towards anyone in particular, this is for anyone who wants to read it because it's the truth. Ugly, beautiful or in the middle, it's the truth.
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On the flip side, as many as I know I've helped with my posts, stats, stories, I've also been told by a few that I need psych help. That I need meds and therapy. Well, first off, are they going to pay for it? Easily $30 a session and I'm not paying for that. Meds I might consider but not if the side effects are bad. Psych help? We all need a little help! Why do you think many have a hobby? I write (obviously) but I also research, listen to music and play music. My daughter has been told that I suck at music but too bad, those people suck for telling my kid that I do. What's that teaching her about her journey with music? Besides, if I "sucked" so bad, why am I still asked to participate in services and also community music? Good thing I had a good life lesson for her in that discussion when she told me someone at church told her that. My older kid wants to eventually play on stage and community band but what if people start talking about her behind her back because she doesn't play "good enough"? Will she have the confidence to tell people to kiss her grits and keep going anyway? (My life experiences helped in that lesson because I also proved that I didn't give up when I easily could have with music, both with the flute early on, recent years and the clarinet the last seven months.) Well, I never could major in music education like I wanted because I couldn't afford a good college, I quit playing entirely for several years before picking my horn up again, I also now have priorities beyond being a "perfect" musician, including being a wife, mom and advocate so there you go. I told her to stand tall and keep on playing because as long as she does her best and never stops learning anything in life, that's all that matters.
So you know, regardless of how someone serves in their community, don't tell them "you suck" because maybe it's you that sucks, not them.
Anyway.....
I don't get out much beyond appointments and church stuff and overall that's fine. I used to be unhappy with that but not in recent months. I'm embracing it more. Enjoying the solitude more. I'm not the extrovert I once was. Yeah, life has changed me but change isn't always bad. (It's a miracle I actually said something like that!) haha! It saves me the drama, the stupid gossip women do and it also saves me the looks of eyes glazed over like glazed donuts when I get asked about my son and the only answer they wanted was "good".
I went from a turbulent, troubled sometimes chaotic kid to a warrior who will not stand down during a fight. I may lose some fights but I refuse to lose the war. I refuse to just give up. If I give up, what does that teach my kids? What will that teach those who are just starting their journey into the medical world? To the one who just got told by a doctor that their child has ____ and they are devastated? What will giving up teach them? What will that teach the one or the parent/teacher of one who is struggling with depression, anxiety or PTSD or any other mental health diagnosis?
To give up!
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Never give up! Never surrender!!
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Never give up! Never surrender!!
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Now, in the realm of the medical world, it too is ugly and beautiful, sometimes both, usually somewhere in the middle and sometimes all over the place.
Consider the words from a dear distant state friend Sharon. She's a foster mom and also a special needs momma for multiple kids, one of whom is saving her a seat in Heaven. This post is an older one but still true.
"As parents of special/medical needs kiddos we walk this fine line-between seeking professional help for our children and stepping over the imaginary line the medical world has drawn.
If we ask/question the choices
If we 'know' to much
If we don't act stupid and uninformed
If we just plain ole piss some professional off for whatever reason
We suddenly become thrown into the thralls of investigations,accusations and the 'look'
We fight for our children, we speak for them,we question ,we demand better fairer treatment.
We should never have to be afraid or worried that if we say the wrong thing,ask the wrong thing,know more than the intern and nurses about our child-our motives our hearts will be thrown under the bus.
To many of us have had this experience, to many of us have had our lives turned upside down due to some (hopefully) well meaning professional - It simply boggles my mind that we are given so much grief simply because we are advocating for our children. News Flash here - we can suggest all day, we can disagree till the moon turns blue - BUT IN THE END ITS THE DOCTORS THAT MAKE THE FINAL CHOICE. We are good but we aren't that good!
SEE THIS IS THE DAMAGE THAT THE CO-LIFERS HAVE CAUSED
I have a dear friend who at this very moment is going thru such turmoil simply due to some nurse questioning the medical choices she has made I ask that you all pray for her and her kiddos-that this is cleared up promptly and fairly - and the scars that will be left wont be to deep. Because there will be emotional scars. And for all of us that are parents to the special ones-may we never be afraid to advocate and speak out."
I am personally not afraid to speak out (obviously! ha!) yet sometimes I do fear what will be written or spoken of me when I do. I don't mean what others think, they can kiss my grits with that, what I mean is the labels in the sense of how will that carry over to my kids when they age out and are on their own? When the adult doctors start treating them and they see the records? When they hear my at that point adult children advocate for themselves. Will I have done good enough in teaching them what to tell the world? How to handle the world? Will they know enough about how to fight? Will they have enough knowledge about their diagnoses to teach the world as I have taught them and the world about them? Will they seek out people who want to help them and ignore the haters and the uncaring? Will they ignore some of the doctors who will call them "micromanagers" or "Too worried" or "Overthinking" type stuff? Or when the doctor tells them that as long as a pill works, the cause(s) and diagnoses for needing a medication doesn't matter? (Yeah, I've been told that too about my daughter.) Will they learn to move on and keep finding doctors who will listen when others give up and quit trying?
I sure hope so..... In the meantime, I gotta keep fighting for them, keep showing them how to fight for themselves for when they have no choice then but to. For when I'm no longer here and all they have is each other.......
A fellow medical mom I have followed for a few years now shared some lyrics in a recent post. I had not heard that hymn till she shared it. These lyrics stood out though, for her and also for me. Even if you aren't religious, the lyrics are so cathartic....
I'm weary with my former toil,
Here I will sit and rest a while:
Under the shadow I will be,
Of Jesus Christ, the apple tree.
This fruit doth make my soul to thrive,
It keeps my dying faith alive;
Which makes my soul in haste to be
With Jesus Christ, the apple tree.
I am weary, I have always been weary.... I'm a survivor and a warrior. I've always had to be on guard, waiting for or in battle. That's been me as long as I can remember and my earliest memory is at age two. Admitting that doesn't mean I need "psych help" it just means it's the truth and in a world where there is so much chaos and busy I know almost everyone is weary, tired, broken, worn out, and much more....
It's even more in the medical world, filled with miracles but also much uncertainty. And sometimes it's filled with devastation, sorrow and storms. The one who posted those lyrics in her blog is the momma of a miracle, yet even her miracle likes to throw monkey wrenches. He's a stinker!
Yet there are also these words that another medical momma shared with me this week. It's so nice having her around, because she can handle my fire where many can't. She's just as much of a warrior as I am, yet I swear she has the wisdom of an old patriarch..... You know who you are. This was shared from a Type 1 Diabetes page she's on.
"Have you ever been so tired that the taste of cheap coffee seems like a blessing?
Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?
Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?
The medical mama has.
She’s held her child as they’ve screamed in pain from an IV or a catheter.
She has comforted her baby through the metal rails of a hospital crib.
She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.
When it comes to medical jargon, she has the vocabulary of a tenured doctor. She has spent the few moments she has to herself researching her child’s condition.
She is tired, but not weak.
She has broken down, but still keeps pushing.
She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.
Oh, but the milestones. Maybe they’re few and far between, but they are moments you will see such ease in that mama. She will recant the details perfectly, as she’s played out the moments over and over in her mind. She has a thousand videos and pictures of her baby to prove they are perfectly made, even if their diagnosis says otherwise.
You have to understand, the medical mom sees things a bit differently than the average mom. They get to believe in magic, in miracles and in prayer because they have given birth to the proof it’s real. Regardless of what anyone could ever tell her, she has watched her child break every rule and negative expectation. Her baby is heaven-made.
The florescent hospital lights and multiple cords have become the landscape of her motherhood. The sound of beeping machines is the soundtrack. She has become defined by the hard edges of hospital walls and the notches in medicine syringes.
She has used every bit of patience on her child and their needs, so she appears to be short-tempered and lacking social skills.
Rare disease information
Find a patient organization
Advocate
Her days are full of chatting with therapists or other medical moms, as they are the support system that keeps her standing.
Her child speaks to her in their own special language, and no one will advocate for that baby like she will
She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it - Anonymous"
And finally, this one from The Mighty:
What Love Is When You Parent Kids With Disabilities
Love waits in countless waiting rooms of countless doctors for appointments and therapies.
Love smiles at the nurses because you need them on your side.
Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.
Love spends sleepless nights researching.
Love is a medical advocate.
Love remains calm when a nurse is digging around looking for a good IV vein.
Love holds a screaming child down for procedures.
Love is bold enough to say “stop.”
Love can recite endless lists of surgeries, medications and dosages.
Love knows how to smile so that the child isn’t scared.
Love cries and screams into a pillow in a hospital bathroom.
Love knows the wrongdoings but uses them to be an empowered advocate.
Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.
Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.
Love pushes past those who can’t see potential.
Love sees potential.
Love never fails because it always tries.
When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.
Love knows that “different” is not a negative term.
Love knows that different is beautiful.
Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen.
Love is happy to sacrifice.
Love is a force.
Love is a mother.
~ MaryEllen Pollard ~
As I shared in my last blog post here about the neuro world, there are things I never thought I would learn. There are stories from others I never thought I would hear. There are countless families not just in the neuro world but in the medical world as a whole who feel much of what I do, yet too struggle with not just the weight of what that world is but the lack of understanding, compassion and friendships from others. Yet I never thought I'd memorize the stuff I have and can recite it all from memory.... To the point that I even surprise nurses that I know and remember so much.....
The main thing I want my children to know, is that I loved them. I fought for them.... I fought for others who didn't have a voice, who didn't have someone standing there to fight for them. For those who get bashed on social media, even myself, I fought for. I spoke for, I took flak for. Why? Because we need to be taught again love and respect..... We need to be taught again how to have each other's back regardless of anything else. We need to be taught again to instead of throwing stones like the crowd, to have compassion and a heart. To do what Jesus did that day he told the crowd to stop and the first to never have sinned can cast the next stone. Guess what? The crowd walked away and quit throwing.
We need to do the same....
So, let's show more love, let's see people, let's see their souls and not the shell. Let's see and learn about people and why they are the way they are. Let's do better..... You don't have to know exactly what someone is facing to be there for them, to stand with them, to fight along side them. You will learn quickly enough what it takes to be a warrior and when you do, you will find better understanding of who we really are. "But that person...." So what!!! Put yourself in danger with a criminal? No. BUT if all that person is is someone who looks different, talks different, poor, rich, outsider, insider, outcast, popular, it doesn't matter. Go to the prisons and do outreach, go to the homeless shelters, go to the orphanages, the foster homes. Go to your schools, your churches, hospitals, recovery groups, youth groups, nursing homes, seek them out. Observe. You'll learn real quick who is alone, who the outcast is, who all is crying out yet nobody to hear them.
LOOK INTO THEIR SOUL!
The place where most will not go, where most will not hear, will most would ignore, where most would just rather not be bothered, GO! Even if that is through social media, or telling your story. Be prepared to hear a lot of heartbreak, disappointment, anger, anxiety, sadness, and more.
The fastest way to move through your own troubles, stresses, and pain is to reach out and help someone.
Remember this Diana Ross song: “Reach out and touch
Somebody's hand,
Make this world a better place if you can......
Take a little time out of your busy day,
To give encouragement to someone who's lost the way.”
Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?
Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?
The medical mama has.
She’s held her child as they’ve screamed in pain from an IV or a catheter.
She has comforted her baby through the metal rails of a hospital crib.
She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.
When it comes to medical jargon, she has the vocabulary of a tenured doctor. She has spent the few moments she has to herself researching her child’s condition.
She is tired, but not weak.
She has broken down, but still keeps pushing.
She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.
Oh, but the milestones. Maybe they’re few and far between, but they are moments you will see such ease in that mama. She will recant the details perfectly, as she’s played out the moments over and over in her mind. She has a thousand videos and pictures of her baby to prove they are perfectly made, even if their diagnosis says otherwise.
You have to understand, the medical mom sees things a bit differently than the average mom. They get to believe in magic, in miracles and in prayer because they have given birth to the proof it’s real. Regardless of what anyone could ever tell her, she has watched her child break every rule and negative expectation. Her baby is heaven-made.
The florescent hospital lights and multiple cords have become the landscape of her motherhood. The sound of beeping machines is the soundtrack. She has become defined by the hard edges of hospital walls and the notches in medicine syringes.
She has used every bit of patience on her child and their needs, so she appears to be short-tempered and lacking social skills.
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Advocate
Her days are full of chatting with therapists or other medical moms, as they are the support system that keeps her standing.
Her child speaks to her in their own special language, and no one will advocate for that baby like she will
She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it - Anonymous"
And finally, this one from The Mighty:
What Love Is When You Parent Kids With Disabilities
Love waits in countless waiting rooms of countless doctors for appointments and therapies.
Love smiles at the nurses because you need them on your side.
Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.
Love spends sleepless nights researching.
Love is a medical advocate.
Love remains calm when a nurse is digging around looking for a good IV vein.
Love holds a screaming child down for procedures.
Love is bold enough to say “stop.”
Love can recite endless lists of surgeries, medications and dosages.
Love knows how to smile so that the child isn’t scared.
Love cries and screams into a pillow in a hospital bathroom.
Love knows the wrongdoings but uses them to be an empowered advocate.
Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.
Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.
Love pushes past those who can’t see potential.
Love sees potential.
Love never fails because it always tries.
When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.
Love knows that “different” is not a negative term.
Love knows that different is beautiful.
Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen.
Love is happy to sacrifice.
Love is a force.
Love is a mother.
~ MaryEllen Pollard ~
As I shared in my last blog post here about the neuro world, there are things I never thought I would learn. There are stories from others I never thought I would hear. There are countless families not just in the neuro world but in the medical world as a whole who feel much of what I do, yet too struggle with not just the weight of what that world is but the lack of understanding, compassion and friendships from others. Yet I never thought I'd memorize the stuff I have and can recite it all from memory.... To the point that I even surprise nurses that I know and remember so much.....
The main thing I want my children to know, is that I loved them. I fought for them.... I fought for others who didn't have a voice, who didn't have someone standing there to fight for them. For those who get bashed on social media, even myself, I fought for. I spoke for, I took flak for. Why? Because we need to be taught again love and respect..... We need to be taught again how to have each other's back regardless of anything else. We need to be taught again to instead of throwing stones like the crowd, to have compassion and a heart. To do what Jesus did that day he told the crowd to stop and the first to never have sinned can cast the next stone. Guess what? The crowd walked away and quit throwing.
That's how one leads to Christ. With love, compassion, understanding, forgiveness and being willing to listen.
We need to do the same....
So, let's show more love, let's see people, let's see their souls and not the shell. Let's see and learn about people and why they are the way they are. Let's do better..... You don't have to know exactly what someone is facing to be there for them, to stand with them, to fight along side them. You will learn quickly enough what it takes to be a warrior and when you do, you will find better understanding of who we really are. "But that person...." So what!!! Put yourself in danger with a criminal? No. BUT if all that person is is someone who looks different, talks different, poor, rich, outsider, insider, outcast, popular, it doesn't matter. Go to the prisons and do outreach, go to the homeless shelters, go to the orphanages, the foster homes. Go to your schools, your churches, hospitals, recovery groups, youth groups, nursing homes, seek them out. Observe. You'll learn real quick who is alone, who the outcast is, who all is crying out yet nobody to hear them.
LOOK INTO THEIR SOUL!
The place where most will not go, where most will not hear, will most would ignore, where most would just rather not be bothered, GO! Even if that is through social media, or telling your story. Be prepared to hear a lot of heartbreak, disappointment, anger, anxiety, sadness, and more.
The fastest way to move through your own troubles, stresses, and pain is to reach out and help someone.
Remember this Diana Ross song: “Reach out and touch
Somebody's hand,
Make this world a better place if you can......
Take a little time out of your busy day,
To give encouragement to someone who's lost the way.”
So instead of excluding people or just pretending they don't exist, let's give people a chance. None of us will shine at everything. That's not how it works. However, where we are given the chance to at least try, when we are encouraged to try, we have a chance to know where we will shine at. Cheer people on when they triumph. Pick them up when they come crashing down. AND even more, do that for those you don't like or don't know either. I don't care who or what they have done. Just do it! This world would be a better place for it if we could just learn a few lessons here.
***********************
Maybe by doing that, someone will talk about how you changed their life.
************************
Let's do better!
Give love. Be love.
Especially because it's Christmas time and many have nobody.
*******************
~ Special Momma ~
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